Wednesday, December 31, 2008

2007

I can't say I'm sad to see 2007 end. Usually New Year's Eve brings with it a lot of reflection on how the previous year has gone while at the same time developing a vision of what I wanted my life to look like in the coming year.

Tonight I find myself sitting with deep disappointment that my health isn't where I'd hoped it would be. Really though, how could it with all that damn mold we were living in. But still. I'm worse than I was one year ago with some added symptoms. I fear I'm starting to develop vertigo. I had a mild sense of it today a few times. It scares me. I don't want that too.

I've been thinking more about my visit with the new doctor and I think I will look for another one. I think I need someone who has at least heard of this illness. He wondered if I'd had some sort of stroke that brought this on. He also failed to follow up on the chest pain that I both told him about and filled out on the form in multiple places. I tearfully told him of my increasing depression and wanted to start an antidepressant. That too was ignored, or rather, unheard.

I miss Dr. Kliman. He would have prescribed an antidepressant, referred me to a cardiologist, and then we would have sat and talked about life. I have a feeling this new doctor is going to order a lumbar puncture (he asked if I'd had one) as well as an MRI of my brain.

This new doctor acknowledged that I probably wanted to start treatment right away but he wanted to review my medical records. He is going to see me again on 1/8. I'll keep that appointment but will look for a doctor in the meantime.

I really need some hope and I really need to have some improvement next year. I'd also like to experience a sense of peace and acceptance about this. It'd be nice if I developed a deep sense of spirituality but to be honest, at least tonight, I have no hope that, if there is a God, that It even listens to my pleas and prayers.

The hard, bitter lesson I've learned this year? There are no guarantees. There's no guarantee that if you do the right things that things will work out. I got a taste of that when my mom died, this has just compounded that. She did everything right but developed cancer and died 44 days after being diagnosed.

I remember one night she had a deep spiritual experience where God told her we (her family) would be alright. The knowledge gave her a sense of peace. Obviously God couldn't see very far ahead because here I am 13 years later with a fucking devastating disease that seems to be slowly progressing. I have nothing to offer anyone. Nada. Nothing. Just a body occupying space. Am I angry about it tongight? You bet. I'm angry that I have this tinnitus. I'm angry that I can't walk a fucking block. And I'm angry that I'm having feelings of vertigo coming on. I can't do volunteer work. I can't live my dream. I got my Phd and blam. I'm less than 300 hours away from having my hours towards licensure. And you have to have 3000 hours. I was working my ass off. If I don't have the required hours by January 2010 I lose them all. Every single hour that I've worked so hard to accumulate.

I've made a lot of mistakes in my life. I regret them. But I didn't deserve this. Nor does Daphne. It's fucking not fair.

The song that's been in my head today? From A Chorus Line:

Kiss today goodbyethe sweetness and the sorrowwish me luckthe same to you

Maybe the best that could come of my life now is that people look at it and think "thank god that's not my life, her life makes me so grateful about mine." I've become that person. Ugh.

Daphne just tapped me on the shoulder to point out that it's not 2007. It's 2008. See what I mean?

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About Me

I first became ill in July of 2007. Or at least that's when I started having symptoms that I couldn’t explain away with being too busy, too stressed, not eating enough, not getting enough rest, etc.
In August I passed out while eating in a restaurant. In September I remember climbing some stairs while visiting a museum in SF and feeling a sense of profound fatigue. As I climbed the stairs I thought to myself "it's as if my cells aren't getting enough oxygen"and for a minute worried I might have some sort of leukemia. During lunch I literally had to put my head down to sleep.
By the end of December of 2007 I was housebound due to dizziness, fatigue, cognitive impairment and a myriad of other symptoms.
I'd completed my dissertation in 2006 and awarded my PhD in Jan 07. I'd always been active, athletic, driven.
Imagine my surprise when this all happened. It's been a life changer.
This illness is not for the faint of heart. 20% of people with cfids commit suicide. It's a fact. The illness is that devastating. I used to believe that cancer was the worst thing one could have. I no longer believe that.
Luckily I plan on getting as well as I can with the right help